1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Trying to get past7.5

Posted , 10 users are following.

TIsser
TIsser

have been on 7.5 for several months with fairly mild discomfort.

have now had a couple of weeks with more discomfort not being able to walk far and legs quite painful. Have had to up my dose in hope all will settle down again. Refused to admit I needed to up my dose as hoping my body would settle, have been using the slow reduction method with success up until now. Had hoped I would be off pred in the next year or so...seems highly unlikely.

0 likes, 9 replies

9 Replies

  • EileenH
    EileenH TIsser

    Posted

    However slowly you reduce the dose you will never get past the lowest dose that is enough to manage the current level of inflammation. You are not reducing relentlessly to zero - just the dose that keeps you comfortable until the underlying cause of the inflammatio, an autoimmune disorder, burns out and goes into remission. Of course, that means once you find that right dose, you keep trying a small reduction every couple of months or you would never know if it had gone away. When it does it can be fairly sudden - so you never know. But it doesn't help to say "I'll be off by New Year..." - you just are disappointed when it doesn't happen.

    It will happen.

    • susanjeanne
      susanjeanne EileenH

      Posted

      I have to thank you, Eileen, for contributing your wealth of knowledge on this site. I’ve learned more from you than from my doctors and am still learning. I’m rather new to PMR and have it along with a condition called MGUS, so sometimes symptoms cross the line between each condition. You always make me feel reassured. We’re very lucky to have you with us. 

    • EileenH
      EileenH susanjeanne

      Posted

      I didn't realise that MGUS caused much in the way of symptoms - but let's face it, PMR itself seems to run a gamut of symptoms on its own which seems to confuse the doctors who like to believe that the textbooks cover it all! Sometimes their beliefs about symptoms seem to describe another disease don't they? Morning stiffness? My morning could last all day! 

      And thank you redface

    • susanjeanne
      susanjeanne EileenH

      Posted

      Many doctors say that MGUS causes no symptoms but most of the people I know that have it disagree. Fatigue and achiness are common, although if you also are dealing with an autoimmune disease, it can be a carryover from that. 
    • TIsser
      TIsser EileenH

      Posted

      Thank you Eileen, it’s always great reading your replies and gives more clarity into the illness PMR.  
  • lilian05079
    lilian05079 TIsser

    Posted

    Hi Tlsser

    Did you have pain in your legs when diagnosed with PMR?...reason being if you did not, then you could be experiencing bone pain which indicative of steroid side effect when getting to low doses in some cases ..it happened to me....because steroids cause adverse problems with your bones.....my best wishes to you Tlsser

    • TIsser
      TIsser lilian05079

      Posted

      Hi Lilian thank you for your good wishes, your note helped to clarify the pain in the legs, when first diagnosed I had pain everywhere I could not lift my leg over the front door step. Bones appear to be ok according to Dexa scan last year have appointment for another in new year.  Regards Tisser
  • Anhaga
    Anhaga TIsser

    Posted

    I do remember a stage when my legs really ached when I walked.  I think it was my shins, and I was at about 4 mg at the time.  My doctor, as usual, wasn't worried.  And eventually this went away, I don't know when.  At night during that time I often had trouble sleeping because the legs were so painful - not a really bad pain, just enough to be noticeable - until I realized if I got a hot water bottle and kept my legs warm I was much more comfortable.  So I suppose it must have had something to do with circulation. 

    • TIsser
      TIsser Anhaga

      Posted

      Hi Anhaga thank you for your reply I can appreciate your note on the legs, mine is the same will try hot water bottle.... Regards Tisser....
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.